Following L and me on our journey of health and happiness

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Lily’s 8th birthday was such a success. In the lead up to her birthday (and the subsequent week), she was ecstatic. Birthday parties, Valentines Day and Hawaii? All in one month? It was almost too much.

But not really – seeing her so happy and (mostly) healthy – especially at this time of year – is such a relief.

Here are a few photos from her birthday… which included a ballet class with the NY City ballet (serendipitously scheduled on her birthday), a party at school, a play date and then dinner at her favorite restaurant Playa Betty’s.

We are day 3 into our Hawaiian adventure and this kid hasn’t stopped beaming. Thank you Make-a-Wish! Here are a few shots… leaving for Honolulu at JFK, getting a tour of the cockpit with the captain of the plane at landing, riding a limo (with Urszula), relaxing at the pool/beach and partying it up at a luau! More photos to come.

This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. We had Lily’s luau birthday bash took at school this afternoon in anticipation of her upcoming Make-A-Wish trip to Hawaii!

Her party was a success. It started with a ballet class taught by New York City Ballet (check out Lily independently getting her feet into 5th position) and then the luau with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan. And then we had dinner at Playa Betty – her favorite restaurant. Afterwards we walked/ran home with excitement to have some more singing of ‘happy birthday’ and blowing out candles.

Please don’t tell me you are “sorry”. When you find out someone’s child is disabled (i.e., has Autism, Rett syndrome, Down’s syndrome, etc.) do not say you are “sorry” – we understand you mean well, but it is incredibly upsetting to hear. Our child is still our child. She has not died and we are not at all sorry she exists. We are madly in love with her. As you are with your child. Every accomplishment, development, laugh, makes our hearts sing! Just as your child’s accomplishments, development, happiness, makes your heart sing. Every tear she sheds breaks our hearts. Just as your child’s tears breaks yours.

Granted, ours is not a life we likely would have chosen. And we have had to drastically shift our expectations (like continental – tectonic plate shifts). And we have had to come to terms with a life completely different than the one we had expected to lead. And it is a challenge. And it is not one we would ever expect you to understand. And it is not one we would ever want you to lead…it is hard. And we are NOT sorry. Our child gives us unspeakable joy and you saying you are sorry about her is heart breaking and painful to hear. We only wish you could see her as we see her and enjoy her as we enjoy her…So do not tell us you are sorry.

Lily and I just got back from a week in Florida visiting our family. It was a good trip. But a tough one. It’s not as easy to travel with her now. She’s bigger. Her symptoms have evolved. And caring for her has gotten more complex.

I’m exhausted. Lily is too. But damned if we’re going to let Rett Syndrome keep us away from our family.

Here are a few photos of our vacation. There were a lot of smiles. But there were definitely a lot of tears and frustration and really hard days and very scary moments too. They just don’t make for good pictures. So I’m only going to share the happy ones.

I’m also going to share an article from another special needs mom who writes about the isolation and exhaustion that comes with being on this path. Thank you Amy from Raising the Extraordinary for so beautifully and eloquently explaining what this journey is like for us moms.

And thank you Florida family for loving and supporting me and my girl so very much.

The past few months have been extremely stressful so writing posts has not been a top priority. However, I didn’t want to leave you hanging for too long. I’m proud to say that Lily has been showing improvement in many areas. Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part). Her breathing is still an issue though that too seems to have gotten better.

I have been obsessed – OBSESSED – with her caloric intake. And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger. She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating. It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt. Whatever. The kid is eating.

But I can’t completely relax. We still have days that are difficult for her. Really difficult. Heart-breakingly difficult. And I’m trying to shake the hangover of what she went through these past few months but I can’t completely. Rett Sydrome is always lurking around and we just never know when it will pounce. I can’t make this the focus of my attention as it will destroy me.

So I remain in hope. And there’s good reason. Last month two significant announcements were made about Rett research. One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls. And the other was regarding the path toward a cure using gene therapy. Awareness-raising and fundraising are now more important than ever.

Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.

On February 8th, Lily is going to be six years old. In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I will match up to a total of $1500 donated to her RettGive.org page between today and the 8th.

I’m so proud of this kid – she literally smiles in the face of adversity. I see it every day when she’s struggling to stand, walk or breathe. I see how hard she works to do – well – almost anything right now. I pray for the day when Rett Syndrome will be just a painful memory.

For those who have already generously donated… from the bottom of my heart, thank you! Your support and love is palpable. For those who’ve not gotten around to it yet, or don’t feel that giving $10 or $20 will make a difference, believe me when I say that every dollar counts.

Lily is the bravest, sweetest, smartest, hardest working almost 6 year old that I know. And I know that one day in the near future she, and her Rett sisters, will be cured. But without funding, it will remain a pipedream.

Like this:

Tomorrow it will be three years since we got the Rett Syndrome diagnosis. Sometimes it feels like time has stood still since that moment. Sometimes it feels like time is racing by. Sometimes I feel like I’m on top of it. Sometimes I feel completely defeated.

These past two months have really put us to the test. And I’ve been more afraid now than I was when I first heard the words ‘your daughter has Rett syndrome.’ I don’t think it’s because I was naive to what the future could hold. I’ve been cautiously optimistic that my kid would beat the odds and be healthy. And we’ve taken every measure to try and make this a reality.

However, her health has taken a nose-dive as of late, as many of you know. And I’m still looking for answers to what’s been going on. But have come up with nothing new.

Physically I’ve noticed that she has been getting stronger. Afternoons and evenings are better for her. She can walk around most evenings completely independently and somewhat safely. But mornings… they take my breath away. And not in a good way. Most mornings she is struggling to stand. Some mornings, she can’t even get herself up to sit. But when she is struggling, she has a smile, and a determined look on her face. It’s almost like she’s saying ‘I’m going to have fun while fighting this.’ I try to take her lead on these things. I really do. But it’s fucking heartbreaking.

Just as she’s been seemingly getting physically stronger, a new symptom has reared its ugly head out which is putting a wrench on her recovery. Breathing. Or lack thereof. The past two nights in a row, it’s taken her 5 hours to fall asleep. Breath holding and hyperventilating for hours at a time. She’ll fall asleep, but forget to breathe while doing so. Which means that a few moments later she wakes up gasping for air. It’s been this terrifying cycle to watch. And there is nothing I can do but hold her hand and tell her I love her and that I’m proud of her and that we will figure this out.

In a few weeks she is going to have a birthday. Six years old. In many ways she is a typical 6 year old – she loves to play dress up and read stories and giggle. But in so many ways she is not. There are way too many hospital visits. Way too many health issues.

The scientific community is inching closer and closer to a cure. Some say it is a matter of 3-5 years. This is not soon enough. But one day, Lily will be rid of this Rett monster. This is a fact.

For those who were considering sending her a birthday gift, the greatest gift you could give would be making a donation to the Rett Syndrome Research Trust. In honor of Lily’s birthday and diagnosis day, I’ve created a fundraising page specifically for her. I have an audacious goal of raising $100,000 by year end. Help me get there. Help me spread the word.

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About me

A busy mom living in Manhattan, working full time in a job that I love and raising my sweet little L - the sweetest, prettiest, funniest, hardest working, smartest, bravest 7 year old out there, who happens to have a genetic disorder called Rett Syndrome.
This site is for family and friends to follow us on our journey of health, happiness and the occasional hospital visit.
For more photos and updates, follow us at @c_m_salerno on Twitter and salernochristine on Instagram.